Jan's Journey

My journey began on December 22, 2005, at 11:35 AM when I awoke in a recovery room with intense and unbearable body-wide pain after undergoing a hysterectomy. I soon learned that I was intolerant of morphine, codeine and all other opioid medications. Several weeks afterward during follow-up appointments at my doctor's office to find the cause for my relentless pain and aches, a physician's assistant asked if my marriage was okay. She suggested that I was only seeking attention and that the pain was psychological. I was shocked that my increasing pains and debilitating symptoms were not being taken seriously.

My illness included metabolic syndrome, migraines, poly-cystic ovarian syndrome, cognitive difficulties, functional loss, and unrefreshing sleep. I practically laid on the couch or my bed for 16 months with pillows supporting my arms and legs so they wouldn't touch each other and cause more pain. During this time and out of desperation I convinced a sympathetic surgeon to remove about one-fourth of my breast because I couldn't lower my arm to touch my side without feeling excruciating pain at a very specific place, which I am now convinced was a tender point.

Visits to different medical specialists ruled out MS, lymphoma, or any identifiable neurological or muscle disorder. Later I learned that a fibromyalgia (FM) diagnosis could have been made by a physical examination determining 11 of 18 specific body site tender points along with a history of chronic widespread pain in all four quadrants of the body, above and below the waist lasting longer than three months. If my doctors had been educated about diagnosing FM, my journey may have been far less traumatic and much less expensive. Most importantly, I would not have questioned myself and whether my symptoms were real or psychological. They were real! My supportive family would have saved a lot of unnecessary emotional time and energy while I searched for a diagnosis of this life-altering chronic pain condition.

My path to less pain and better health began through education about fibromyalgia, which empowered and helped me slowly regain my life. I learned the importance of posture, deep breathing exercises, and moving, as they all help a deconditioned body become healthier. My exercise program began with walking to my mailbox each day and adding 30 seconds of extra walking each week. I improved my diet, avoided certain bothersome foods, and reduced stressful events.

During those bedridden months staring wistfully at my clothes in the closet and wishing for my former health, I promised myself that if I ever made it out of my bed alive I would speak out on behalf of people who are unable to regain their lives due to a chronic pain illness. Even though chronic pain is invisible, the people who live with it are not. In January of 2011, with the help of others also experiencing FM, I founded the National Fibromyalgia & Chronic Pain Association a 501(C) 3 nonprofit organization. It purpose is to provide necessary answers, resources and most importantly, hope, to people searching for information about living with their chronic pain conditions. The mission of the NFMCPA is to unite patients, policy makers, medical professionals and scientific communities to transform lives through visionary support, advocacy, research and education in order to develop affordable and accessible treatments and cures for fibromyalgia and chronic pain illnesses.
Through the NFMCPA I look forward to sharing your journey with fibromyalgia and chronic pain in order to lift your burden and offer hope for a much better, pain free tomorrow.